95 replies to this topic

[MaryO]

After this Thursday's interview, there's no one else on the schedule. We need volunteers for this - it's easy to do and we will work with you on the time if Thursdays at 7:30 PM doesn't work for you.

Please consider sharing in this new online medium!

[ikho1967]

Hey Mary, I think the voice chats are awesome. I would like to participate, but I am not on my game right now. I wouldn't mind being stuck on the end of the schedule though. Maybe by June I'll be a bit more up for it. Hope so.

[LisaMK]

I'm so afraid of saying something wrong or bad or... yikes!!! If there's a topic, I'd be happy to do it.

[judycolby]

Sign up Lisa, I want to hear your story! The topic is "you & Cushing's"!!!! Really, it's easy, just like visiting on the phone, you tend to forget that anyone is listening besides the interviewer.
Judy

[staticnrg]

Hi, Lisa and Lisa...it's easy. We'll ask questions to get you going, but you probably won't need them. You have so much info to share!! The time flies by...30" really isn't long.
XOXO
Robin

[twinkie]

Hi all,
I haven't heard all the podcasts yet. However, I noticed that time ran out on all of those I heard and no one got to call in. I wonder if you could even have some of the old guests back on with the chance for us to call in.

I don't feel I would be a good guest at this point since I don't have any answers about my condition yet. But once I get squared away, I would love to share.
love,
melly in nv

[ikho1967]

Ok Robin... Sign me up. :.) I usually am good at talking a lot--maybe too skilled at it... lol Just these days I forget where I'm at...lol... So I'm thinking you might get a little better interview in a couple of months. So if you get some more takers I'll def. let them go first. :.)

[copacabana]

I would do it, although I haven't had surgery yet. Is there a guideline on who can speak based on diagnosis/treatment?

[rooon55]

I want to hear the Lisa's stories................It' easy and Mary and Ribin help you if you get Cushie mind and forget something.


I'll be listening

[FerolV]

We all have pretty much the same story, and still each is unique. Some have more trouble getting a diagnosis confirmed, others have no idea what to look for, just knowing something is wrong. Put me on a schedule, and send instructions! Mine gets a little graphic in the post surgical experience.

[MaryO]

The instructions are here: http://www.cushings-...s/interview.htm

[Judy from Pgh]

MaryO and Robin,

I would call in (I havent heard the podcasts yet) but my case is very old. I had florid cushings and surgery April 19th, 2000. That was 8 years ago. All i could talk about is the lingering effects of having had post cushings and then having another illness - vertigo, and the complications of steroids that would arise.

I think the only benefit in me talking would be to talk about why recovery can take longer than the best of doctors can predict. BUT, I DONT WANT TO DISCOURAGE anyone in the recovery process.

I think there are many others who are more up-to-date in their knowledge and journey of cushings.

I have done TV segments and did awareness interviews in 2000, so .....................if you want to do one on vertigo???? No really, I dont feel i am a good candidate.

xo Judy xo ..........and keep up the good work. Maybe I could get my sister to do an interview...now that would be an interesting interview !!! ...........or my son ??? .........


ACTUALLY, I HAVE JUST TALKED WITH MY SISTER AND SHE IS VERY WILLING TO TALK FROM THE VIEWPOINT OF ....HAVING A SISTER WHO HAS COME DOWN WITH CUSHINGS AND HOW IT EFFECTED HER LIFE.........If this is something you are interested in I can let her know. She is sick with a bad cold right now so it would be a few weeks from now.....

[stacey]

Tomorrow is my 6 month post-op MRI and doc visits. Depending on outcome of that I would be willing. If it goes well I will be telling everyone of my CURE!! Willing listeners or not:) Stacey

[LynziMarie]

I would do it!!!! haha
but I have no answers.......

My story is kinda boring too.
but I'd be willing if you really needed someone to fill up time hehe

[heather_suite]

I can do it, although I would probably be best at just answering questions. I had surgery 2 years ago, but still trying to figure what is wrong with me now.

[samsmom]

I'll be happy to do it. Jordan said she would too. We could probably get Sam too; but she'd just talk about her horse.

Let me know Mary.

Jackie

[MaryO]

Ok, the people who have said that they would do this (so far) are:

People who filled out the form at http://www.cushings-...s/interview.htm
FerolV (I got her form first)
HeatherS (second form)

People sounded serious from this topic:
Lisa (Ikho)
Copacabana
Judy's Sister
Stacey
LynziMarie
Jackie
Jordan

For those other than Ferol and Heather, please PM me if you have a bio. If you don't have a bio up, please PM me a little about yourself so that there can be info put up about you on the Guest Speakers page at http://www.cushings-...st-speakers.htm

If you have days / times that are better for you, I'd like to know that, too.

I offered Ferol the May 8 date but I haven't heard back yet. I offered Heather May 15 (or 8, depending on what Ferol said) but I haven't heard back from her, either, so most all dates are available.

Thanks!

[mrsb91986]

Mary,

I wouldn't mind volunteering either, however, I feel kind of funny since I am not dx'd yet.


Mar

[MaryO]

As I recall, these people posted that they would be interested in doing an interview. Please let me know if you still are or not so we can plan for the future. As it is right now, after next Thursday's chat there is no one on the schedule.

A few people have submitted online forms to be interviewed but none has gotten back to me to arrange a time.

• Nicole B (Copacabana), date to be determined
  
• Lisa (Ikho), date to be determined.
  
• Judy's Sister, date to be determined.
  
• Stacey, date to be determined.
  
• LynziMarie, date to be determined.

Is there anyone not on this list who would be interested?

Thanks!

[Jo MacRaild]

Hi Mary, I would in, about 3 weeks time